Sleep Studies and Learning about Lyme Disease

What is a sleep study like? well I can tell you because I've now had two done. You usually are in a room similar to a hotel, but with cameras and microphones and alot of wires. The technician wires you up to the point that you feel like one of the Borg from Star Trek (for all you trekkies out there). There's wires that hook to your legs, to your chest, to your face, and to your scalp. Then there is a strap that goes around your abdomen and then another around your chest. Its really uncomfortable when you get down to it. Then you are supposed to go to sleep like normal and they monitor your brain waves, breathing, and also watch you sleep to determine if you have a sleep disorder. My test results came back as mild apnea, but with my symptoms being so bad the dr has decided to put me on a cpap machine to see if it helps my insomnia. So the second study was a titration study where I was not only wired, but then I had to try multiple face masks till I found one that was "comfortable" (which no face mask is truly ever comfortable for sleep), and then I slept with a cpap machine all night. Or I should say I "tried" to sleep all night, I don't feel like I really did. But I have a follow up appointment with the sleep dr soon to go over results.

I recently learned from one of my blood tests that I might have lyme disease, that's right, it's not for sure, it's "indifinitive, leaning towards weakly positive". I have an appointment with the Dr on Friday to discuss it all. When I first heard this I thought "no, he's waisting his time testing me for this, I don't have lyme, I was never bit by a tick and I haven't been to the East coast since I was 7". But I decided to do more research on Lyme disease, beyond the definition of the CDC or NIH, and oh my gosh my eyes have been opened to a whole new epidemic out there in the world. Not only were the patient stories eerily similar to my own, but there is just so much controversy about whether Lyme exists beyond just the first few months of a bite. What I've found is that yes it does exist, the bacteria (a Spirochete for those who remember microbiology) can lie dormant for months or even years. It can hide from the bodies immune system and also from antibiotics. It can burrow it's way into every area of the body (similar to syphilis) and cause a multitude of symptoms. Lyme exists not just on the east coast of the US, but in all 50 states, and you can be bit by a tick, misquitoe, or even a flea infected with the bacterium. Scary huh? I watched a documentary online called "Under our Skin" and it was even more eye opening into the world of Chronic Lyme Disease. My mother in-law watched it and said "I pray you don't have it" and I thought to myself, I am not praying that I DO have it, but I'm also not praying I DON'T have it either, I am praying that this could be part of the answer I am looking for. It's hard not to feel excited and hopeful that I've found what is wrong, I don't want to go into another dr appointment and hear "Your tests came back normal, there's nothing wrong with you". I will just break down and cry if that happens again. I'm so tired of it all. I'm tired of silently suffering and not knowing what is causing it. I want a name, a diagnosis, and hope that my suffering will be eased. I am not asking for it to be completely taken away and healed (though that would be wonderful), I am willing to endure life with a chronic illness, but when it inhibits me from being able to be a mother, a wife, a sister, a daughter and a friend, I can't handle that. Some days I see improvement, I feel that I have more energy and mental clarity. Then I have days where I am bedridden and have a migraine with searing pain from my eye down to my jaw and then to the back of my neck, a day where I have momentary blackouts and lose my balance and coordination and can barily pick up a fork or spoon to feed myself without spilling it all over my shirt. I mean, that is not normal! and yet I have had doctors tell me that it's psychosomatic (or in other words, all in my head)... they apparently have never suffered anything near this before in their own life or they'd never say that to a patient. I can feel so angry sometimes with the medical community that I have actually worked with for years. I haven't mentioned that part about myself yet. The part of my life when I worked in medicine. I will get to that another day. But for now, my thoughts are resting on Lyme at the moment. I am not saying I have it, but I'm not counting it out quite yet. Either way, it's been another eye opening learning experience for me, and I anxiouly await my friday appointment with the doctor and pray for answers.

A special thank you to all those who have been praying for me, I truly appreciate it. And to all who have read my blog, thank you! It makes me want to keep writing.